This seems so wrong...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

This seems so wrong...

Postby PCakes » Sun Nov 07, 2010 9:27 pm

A friend, after a recent full day MS assessment shared the following...
Bit of background, diagnosed 5 years ago, middle aged, first symptom - foot drop.
Now, 5 years later, same foot/leg severly diminshed function - wearing a brace - using a cane, bladder/bowel issues, severe fatigue and cognitive issues. Copaxone injections for past 2 years.
During the assessment was asked when last MRI took place, admitted to ccsvi MRV and doppler. Doctor's response was angry and frightening. Why would you even be interested? You are not in a wheelchair? It is dangerous! Vascular surgeons do not angioplasty veins. If you travel out of Canada and something goes wrong, your insurance will not cover you! Are you willing to lose your house? You are not going to get better, you are going to get worse..you need to understand that.
No science, no facts.. just an emotion filled attack on a vulnerable and already frightened person who in no way had decided for or against pursuit of ccsvi treatment.
What is going on? :cry:
I am not in Alberta, is there someone, or a group, in the Edmonton area who might be able to lend some support? Please pm me.. thank you.
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Postby Nasti » Mon Nov 08, 2010 1:16 am

You'd better put the hangman image
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Postby ThisIsMA » Mon Nov 08, 2010 4:13 am

Yes, that Dr's reaction seems entirely out of line. Its one thing to be skeptical about the value of a new treatment, its another to be reactionary, judgemental and frightening about it.

Here is a link to a Northern Alberta Facebook group. Maybe your friend could post there asking for support, or you could do so on his or her behalf? If nothing else, you could ask for people's recommendations for more tolerant and/or supportive doctors...

http://www.facebook.com/pages/CCSVI-NOR ... 4475022098
DX 6-09 RRMS
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Postby PCakes » Mon Nov 08, 2010 9:52 am

ThisIsMA wrote:Yes, that Dr's reaction seems entirely out of line. Its one thing to be skeptical about the value of a new treatment, its another to be reactionary, judgemental and frightening about it.

Here is a link to a Northern Alberta Facebook group. Maybe your friend could post there asking for support, or you could do so on his or her behalf? If nothing else, you could ask for people's recommendations for more tolerant and/or supportive doctors...

http://www.facebook.com/pages/CCSVI-NOR ... 4475022098


Thank you for this.. I was hoping to find a TiMS link to the Edmonton area as I am unable to participate on 'facebook'.. so if anybody is out there and knows a "more tolerant and/or supportive doctor" in the Edmonton area, as suggested.. please .. let me know.
Thanks!
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Postby garyak » Mon Nov 08, 2010 10:36 am

PCakes I sent you a PM but I'm not sure it got sent properly, let me know if you didn't get it, thanks, gary
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Postby David1949 » Mon Nov 08, 2010 1:14 pm

"Abandon all hope ye who enter this place."

Those are words from an inscription at the gates of hell in Dante's Inferno.
It seems that your friend's doctor wants to deliver that message to people with MS. While those words may be fitting for the gates of hell they are definitely not fitting advice from a doctor to his patient.

It's hard for me to respond to this without violating the websites profanity rules, but here goes; Tell the doctor to get lost and find a doctor with compassion for his patients.
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